Tapering going well so far with a few hiccups

[Dydee]

I have been kept very busy the last year and a half with a move to a state 1000 miles away from our dream home of 16 years. Now we are having to start over with the repairs and upgrades of a different house. and at 80 I was hoping to be done with that. Thank heavens the stress of packing and of the three 2000 mile round trips moving didn't mess with my PMR too much. I did have to pop back up a couple times in trying to taper when my body said the timing was WRONG after we got moved. But I have managed to get steady at 6 mg for 8 weeks and now doing 5.5 every 3rd day trying to go down farther.

In the middle of all of the house stuff I also have started being short of breath and have muscle fatigue just walking from one end of the house to the other. An angiogram showed my heart in great shape then a pulmonary function test showed while I breath IN ok I don't breath OUT very well. Since I try to be active this is a big frustration. It's taking 5 months to get in to see a pulmonologist for what they say is COPD. but not what kind. This seemed to start in early stages of PMR but suddenly got worse recently.

Another issue possibly related to taking Prednisone is that my eye doc is having trouble regulating my eye pressure. This actually started in 2020 when I started taking it. But then I also had Covid at the beginning of taking Pred. and they seem to be blaming a lot of side effects on Covid. I blame my tremors on it. Never had any before. I'm scheduled for laser treatment in Feb. on the first eye.

Just thought there may be others who have had similar issues and found solutions. I have also been prescribed some natural remedies for the adrenal issues with tapering. Astragalus and Rhodiola Rosea Extracts. I assume they are helping because I manage to get up in the morning without an alarm LOL after a good nights sleep and make it through the day OK.

I have learned so much by popping in to read all your posts and solutions. One biggy was the post about esophageal spasms and solutions. I was having them occasionally BIG time but had no idea what they were till that post. I had one sometime after reading it and the solution worked perfectly!!! Thank you all for your expertise and advice.

[piglette]

I believe you should avoid using astragalus if you are taking immune-suppressing drugs. 

[Dydee in reply to piglette]

My Naturopath doc prescribed it. Just started with a Doc of Functional medicine and she agreed. But then they don't have a lot of experience with PMR.

[piglette in reply to Dydee]

Because corticosteroids rely on their immunosuppressant properties for healing, Astragalus may interfere with them. It seems several people are not aware of contra indications of various items with steroids. A lot interfere with the immuno suppressant properties so they don't work so well which means you require a higher dose than you would otherwise need.

[Dydee in reply to piglette]

Thank You! Apparently these docs didn't take that into consideration. Deep sigh.

[PMRpro Ambassador in reply to Dydee]

It is a major problem - whatever the doctor they tend to only see the bit that applies to their problem and not to concurrent disorders.

webmd.com/heart/astragalus-...

says

" Very high doses may suppress the immune system. So you should avoid using astragalus if you are taking immune-suppressing drugs.

Pregnant or nursing women should not use astragalus root. If you have an immune system disease such as multiple sclerosis, lupus, rheumatoid arthritis, or another autoimmune disease, you should not use astragalus root."

[Dydee in reply to PMRpro]

Good Grief! Well, thank heavens I've been on a low dose but don't need my immune system suppressed any further. Will stop taking it for sure. Thank You!!

[piglette in reply to Dydee]

I have worked with the pharmaceutical industry for over thirty years and I have discovered that doctors really know very little about drugs. Half the problem is they never read the literature!!

[Dydee in reply to piglette]

Perhaps you can advise me then. I believe I read that when tapering your adrenals are asleep until you get under 7mg. Is there a point at which you can start supplementing with things to help your adrenals wake up as you go below 6mg? I believe that is what the docs were hoping to do. Help my adrenals wake up as I taper.

[DorsetLady PMRGCAuk volunteer in reply to Dydee]

Most people find their adrenals do wake up by themselves - a gentle, very slow taper and patience is what is required rather than add ins…..

[Dydee in reply to DorsetLady]

OK, I guess that is the best path to take.

[DorsetLady PMRGCAuk volunteer in reply to Dydee]

Worked for me, and I’d been on GCA doses….adrenals did stutter for a while, but we got there in the end…..

[Dydee in reply to DorsetLady]

So much to learn about this.

[PMRpro Ambassador in reply to Dydee]

The only thing that wakes them up is that there is not enough corticosteroid present in the body - nothing else.

[Dydee in reply to PMRpro]

OK, I'm getting it. LOL

[piglette in reply to Dydee]

As DorsetLady says as you reduce the adrenal glands will be forced into actually working as their free meal of cortisol is being removed from them!! If they want cortisol they have to start working again.

[Karenjaninaz in reply to Dydee]

A naturopath doesn’t have extensive medical training.

[Dydee in reply to Karenjaninaz]

Both the naturopath and the functional med doc became licensed physicians first then felt the need to include a more integrative approach in their practice. I also have a GP who knows even less than they do. I was prescribed a steroidal inhaler for my COPD that can increase eye pressure. I waited till I saw my eye doc before taking and he said NO. I have uncontrolled eye pressure since starting Pred. You are right. They go by the book without reading the consequences.

[Karenjaninaz in reply to Dydee]

Prednisone can increase eye pressure. I visit my eye doctor every 6 months.

For asthma you might like pulmonarywellness.org

This is a free site with helpful lifestyle suggestions for asthma and all other pulmonary problems; founded by doctors of respiratory therapy.

[Dydee in reply to Karenjaninaz]

That is great, THANK YOU!!

[Dydee in reply to piglette]

What are the possible issues?

[PMRpro Ambassador]

Rather you nor me!!! I love my current house - brand new and nothing to do to it. If I have to move again I want a repeat!!!! I did my share of renovations over the year. No more ...

[Dydee in reply to PMRpro]

Us too. We are big do it yourselfers and have done every house we lived in plus my folks when they passed away before we put the house on the market and some investment properties. My husband is tired of it. LOL Me, well, it keeps us moving.

[Poshdog in reply to PMRpro]

I am never moving again!!!!

[PMRpro Ambassador in reply to Poshdog]

I know I may have to - but I don't WANT to! If I do, it will be to a flat that is ready to move into and I probably won't take much with me from here - cheaper to buy than move since Brexit I suspect! It will be a very small flat. I MIGHT stretch a point and "do" the bathroom.

[Poshdog in reply to PMRpro]

Once you start.......!!

[PMRpro Ambassador in reply to Poshdog]

Not likely - I have to admit that the McCarthy-Stone retirement flats are ideal in layout but sometimes the previous incumbents had some VERY strange ideas about bathrooms suitable for the aged!!! Baths? NO! That would be replaced pdq with a walk-in shower with enough room for a proper seat.

[Lookingforideas in reply to PMRpro]

i agree. I’ve been living in a ‘building site’ for almost 20 years while my husband tries to drag this house kicking and screaming (the house, although sometimes him too 😂) into the current century- it’s an ongoing ‘project’ which hopefully may be ‘finished’ by the end of this year - by which time some things will be ready for redoing 🤦‍♀️🤦‍♀️🤦‍♀️ No wonder I drink 😂😂

[PMRpro Ambassador in reply to Lookingforideas]

It is said that spending more than 2 years on such a project affects your mental health, I took rather longer over one house although the real agony was over in 2 years. The final cherry was French doors between the open plan dining room/lounge and the open-plan kitchen/winter garden which was completed just before himself announced were were moving to England. I only got to enjoy it for about 6 months. It taught me one thing though: if you are going to do it, do it immediately!

[Dydee in reply to PMRpro]

LOL Sounds sorta like us. We lived there 16 years but did the major renovations in the first year. The rest we did between projects on other houses. Had a gorgeous back yard with raised garden beds, lawn and orange trees by the time we were done. My next move will probably be to an old folks home. LOL

[Suffererc in reply to PMRpro]

me too . Brand new suits me fine . Plus modern 😊

[AshPen9]

What was the solution that worked Dydee?

[Dydee in reply to AshPen9]

The solution for the spasms was to slowly take swallows of warm water. It nipped mine in the bud right away.

[AshPen9]

Thanks, Dydee. Very good luck with the pulmonologist and the laser treatment, not to mention the house!

[Dydee in reply to AshPen9]

I can definitely use the luck!! 😀